Siblings of the Mentally Ill Often Feel Forgotten

The devastating effects of mental illness have been well documented in films, books and academia. But until recently there has been little said about the sisters and brothers of the mentally ill. Now, researchers are starting to look at what they're calling the "well sibling" syndrome.

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JOHN YDSTIE, host:

This is WEEKEND EDITION from NPR News. I'm John Ydstie.

The devastating effects of mental illness have been well documented in films, books and academia. But until recently, there's been little said about the sisters and brothers of the mentally ill. Now, researchers are starting to look at what they're calling the well sibling syndrome.

Karen Brown of American Radio Works has a report.

KAREN BROWN: In families where mental illness hits early, the entire household feels the impact.

Ms. DEB STANAS (Mother): I said we don't have any more soup. Eat it or don't have any.

Ms. OLIVIA STANAS (8-year-old Daughter with Bipolar Disorder): (Unintelligible).

Ms. D. STANAS: Eat what you have. Okay?

Ms. O. STANAS: Eat what I have. (unintelligible) anymore.

Ms. D. STANAS: Eat and take what you have or don't have any.

(Soundbite of dropped utensils)

Ms. D. STANAS: And now you can pick that up too.

Ms. O. STANAS: No.

BROWN: This untold is a relatively calm afternoon at the Stanas household in southern New Hampshire. Eight-year-old Olivia is bounding between the kitchen, for she's demanding a snack from her mother Deb, and the living room where her two sisters are doing homework and playing computer games.

Two years ago, Olivia was diagnosed with bipolar disorder - an illness characterized by debilitating highs and lows and outbursts of violence. Suddenly, Olivia accuses her 11-year-old sister, Audrey, for taking her toys and her mother tells Audrey to go to her room.

Ms. D. STANAS: You know, what, Audrey.

Ms. O. STANAS: You send her up.

Ms. D. STANAS: You really (unintelligible) to do that. And you need to talk to (unintelligible).

Ms. O. STANAS: We are.

Ms. D. STANAS: Olivia sets the tone in the house when she's having a bad day. We're all having bad days. It's next to impossible not to feed off that irritability that inside that anger.

BROWN: Deb says it's been torture for Audrey. Hi, Audrey.

Ms. AUDREY STANAS (11-year-old Daughter): Hi.

BROWN: Come on in.

BROWN: High school?

On this afternoon, Audrey has just gotten off the school bus. She makes herself ramen noodles and relishes having her mother all to herself. It's a half hour before Olivia gets home. As Audrey eats, she recalls the time Olivia's outburst sent her to the emergency room.

Ms. A. STANAS: She started calling me a name, and then, the next thing I know she's saying, I'm going to throw this book at you. And I turned around, right when she was throwing it, so it hit my face and I was bleeding and I remember screaming down the hall and watching the blood drip from my face. I don't believe she ever got grounded for that.

BROWN: Deb Stanas is well aware of the resentment Audrey feels, that her childhood is in many ways at the mercy of Olivia's volatility. For a short time, they took Audrey to a counselor, but it didn't seem to help.

Ms. D. STANAS: She was just so angry. She was threatening suicide, I'm going to run away, I hate this family, I can't live here. And to be quite honest what she went through, part that I can't blame her. She really got abused by distraught and I couldn't separate them. I felt so helpless I couldn't protect her.

BROWN: Deb says she does try to keep Audrey safe from Olivia. She puts them on opposite ends of the house, but as soon as she turns her back, Olivia runs to find her sister. Deb installed a lock on the door, but Olivia found the key.

Ms. A. STANAS: I should have her locked in the laundry room again. That worked.

BROWN: Her mother is actually relieved that Audrey can be so blunt like a typical child because she worries Audrey's growing up too fast. That's why she and her husband's tried to give Audrey days when she's the center of attention, like this cheerleading tournament.

Audrey and a friend were selected to sing the national anthem and the whole family watched, even Olivia, in the packed auditorium.

(Soundbite of U.S. National Anthem)

Ms. A. STANAS and Unidentified Woman: (Singing) Oh say can you see by the dawn's early light…

BROWN: Deb worries that special occasions like this are not enough to insulate Audrey from the stress of their household. And to hear Audrey tell it, that's a valid fear.

Ms. A. STANAS: When Olivia is being a jerk and doing weird things like - and then, I'll be downstairs asking for a question on my homework, and they'll say Audrey, go away now, and won't give me anything until they're done with her, which takes them until like midnight to calm her down.

BROWN: And Deb knows this isn't healthy for Audrey.

Ms. D. STANAS: But it would be so intense with Olivia. By the time I finally got her to bed, and Audrey would say please, mommy just come with me, come lay down with me, and by then my whole body was just, I can't have anybody touch me. I just need to be quiet, without any noise. And so there were days were I'd say I can't, Audrey. I just can't go and come in there. I just have to go in my own bed and be alone. It breaks my heart that I even said that to her because she deserves so much more, you know.

BROWN: Psychologists like Diane Marsh of the University of Pittsburgh said the Stanas family is not unusual.

Prof. DIANE MARSH (Psychologist, University of Pittsburgh): As hard as parents may try - and they do - to meet the needs of their well siblings, time and energy are simply finite. And so siblings often feel like the forgotten family members. Everybody else's problems are more important than theirs.

BROWN: Marsh conducted one of the first studies of well siblings of the mentally ill and wrote about it in her book, "Troubled Journey." Her co-author, Rex Dickens, himself a brother of three mentally ill siblings, says that over time, sisters and brothers of the mentally ill become frozen souls.

Mr. REX DICKENS (Co-Author, "Troubled Journey"): You can't shut down emotionally and part of your life, and in that kind of carries over into, you know, other areas. You can't trust, you can't feel, or you can't talk. So there's a little core there that's frozen in time, and maybe to be dealt with later, but kind of never does get dealt with.

BROWN: Marsh and Dickens have found that well siblings have higher rates of depression than the general public. Other siblings worry they might catch what their brother or sister has.

Clea Simon is a Boston journalist, who wrote the memoir "Mad House: Growing Up in the Shadow of Mentally Ill Siblings." Both her older sister and brother were struck with schizophrenia when she was only six.

Ms. CLEA SIMON (Author, "Mad House: Growing Up in the Shadow of Mentally Ill Siblings"): When you see your brother and your sister grow up and change from your brother and your sister into something scary and weird and alien, you just think that's what happens. You think that when you hit 16 you're allowed to date and to drive. And then you're hospitalized.

BROWN: Simon often witnessed or became the target of her siblings' violent outburst, which is why she and many other well siblings believe they may now suffer from post-traumatic stress disorder - a collection of debilitating symptoms from flashbacks to nightmares.

And while all families are different, most siblings seemed to be affected, at least, by survivor's guilt: why was my sister or brother afflicted? Why not me? Psychologist Dianne Marsh.

Prof. MARSH: And as they mature, and they go on to careers and relationships and families, over and over again, we heard that it is with a sense of loss for their sibling who may not be able to move on.

BROWN: As siblings aged, there are practical concerns beyond the existential ones. In one clinical survey, 94 percent of well siblings reported a pervasive worry that they will have to care for a mentally ill brother or sister when their parents no longer can. And that worry is not an idle one.

Pamela Spiro Wagner and Carolyn Spiro are twin sisters, identical twins they believed. Relaxing in Pam's high-rise apartment near Hartford, Connecticut.

Ms. PAMELA SPIRO WAGNER (Diagnosed with Schizophrenia): (Unintelligible). Pins and needles.

Dr. CAROLYN SPIRO (Psychiatrist, Harvard): Or do you want slippers?

Ms. WAGNER: No, no, no. It's fine. I'm just trying to sort of shake it into life.

BROWN: At 52, both are blonde and petite with long, narrow faces. But one of them looks more weathered, less groomed. You might still not know who's diagnosed with schizophrenia until Pam starts to talk about her breakfast conversation.

Ms. WAGNER: The cup, the teacup was saying to me, there's a chip in me, and it really hurts when you drink tea out of me on that side.

Dr. WAGNER: This (unintelligible).

Ms. WAGNER: Well, there's a tea hanging…

Dr. SPIRO: Maybe the tea had an opinion too.

Ms. WAGNER: Well it might have but…

BROWN: When Pam and Carolyn were children, they both seemed fine. Like many twins, they were best friends and bitter rivals. But no one in the family, not their two other siblings - nor their parents - noticed when Pam first began to hear voices. It was November 22, 1963.

(Soundbite of archived news)

Mr. WALTER CRONKITE (Broadcast Journalist): From Dallas, Texas, the Flash, apparently official, President Kennedy died at 1 p.m. Central Standard Time.

BROWN: While sitting in a grade school classroom, while everyone else was riveted by the news of John F. Kennedy's assassination, Pam says she began to hear murmuring in her head.

Ms. WAGNER: Well, at first, they weren't saying anything. Then they were just saying my name, and they were mangling at, you know, saying Pam Spam, Pam pyro Spiro. And then they started saying kill you, kill it, kill (unintelligible), kill you, kill you, will you kill him, will you kill you. The message was more realization that I'd killed Kennedy.

BROWN: Pam told no one of the menacing voices now filling her head, but well siblings are often the first ones to noticed that something is going wrong, and Carolyn is no exception.

Dr. WAGNER: She was going to school with greasy hair, greasy face and looking disheveled, and embarrassing me.

BROWN: Pam and Carolyn both went to Brown University where Carolyn thrived. Caroline didn't know it, but Pam was falling deeper into paranoia and hallucinations.

Ms. WAGNER: I would just say things like I feel numb. I feel like moon rock, but what I wouldn't say is that there were also voices saying, you'll feel better if you burn yourself.

BROWN: And then, Pam tried to kill herself with an overdose of sleeping pills. She left college and moved back home. Carolyn finished at Brown and went to medical school.

Looking back, she sees she made choices very much connected to Pam's fate. She became a psychiatrist and she married young, something she now thinks was her way of proving she was normal.

During these years, Pam had lucid stretches where she honed her writing skills and won awards for poetry. But the voices always came back, and Carolyn got frequent calls from emergency rooms where Pam ended up.

Dr. WAGNER: At that point, I was at my wit's end. She was becoming desperately suicidal. They were treating like she had a terminal illness, you know, you might want to consider saying goodbye.

BROWN: Pam did survive, and recently she found a medication that has kept the voices at bay. Pam and Carolyn have now told their story in a new memoir called "Divided Minds: Twin Sisters and their Journey Through Schizophrenia." They went on a book tour, trading off reading passages at colleges and bookstores.

Ms. WAGNER: Would you mind turning off the radio? I asked the taxi driver. It's hurting my ears. Head turned toward me, then, lady, you must be hearing things where's the radio being on.

BROWN: The book wasn't easy to pull off as Pam was hospitalized several times during the writing process. Even during the tour, Pam's paranoia is never entirely gone. She's still worried about something she calls the Hazmat Man. That's a figure Pam sees when she looks at the hazardous material symbol on her plastic medical baggies. Carolyn tries to emphathize.

Dr. WAGNER: Is it a threatening man or is it just…

Ms. WAGNER: Oh, he's not threatening now because I know where the real Hazmat Man. He's locked up in an Altoid box, double duct-taped.

BROWN: This is where Carolyn's face goes from bemused to exasperated.

Dr. SPIRO: You don't really believe that, do you?

Ms. WAGNER: I mean, I had the box and it's still taped up.

Dr. SPIRO: Keep it taped up.

Ms. WAGNER: I do, but you don't really believe this, do you? I mean, in all honesty?

Dr. SPIRO: There are times that it feels like a lot when I'm getting behind in my own bells, when she's getting sick, when she's deciding on her own not to take medication, which she's not doing at the moment. But - then I feel it, oh yeah. That is an imposition. Then I hate it. Yeah, you've got the freedom to not take medication because you're independent. You get to do what you want when you want to do it, and the hell with whatever I want. And guess whose freedom you get to take away? Mine.

BROWN: And yet Carolyn says she can't imagine a world without the twin sister she loves, a sister who's sensitive and smart but who clearly drew the short straw.

Dr. SPIRO: I'm so lucky. None of us deserves anything, really. We just get it by grace of whatever. I guess, I'd think I could just as well have been the one who got schizophrenia.

BROWN: And she could have. Schizophrenia does have a genetic component. If one identical twin has the disease, the other has about a 50 percent chance of getting it, even if they've been raised separately. The rate is closer to 60 percent for bipolar disorder. But environment is also likely to be a factor. Schizophrenia might be triggered by something as simple as a virus in people predisposed to the disease.

Regardless of the causes, one in a hundred people suffers from schizophrenia, which means that several times that number of siblings suffer along with them. To say those are the well ones is, of course, a matter of semantics because when a family copes with mental illness, no one gets out unscathed.

For NPR News and American Radio Works, I'm Karen Brown.

(Soundbite of music)

YDSTIE: You're listening to WEEKEND EDITION from NPR News.

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